Consumer Involvement

Ivy Elkins - My Life as a Lung Cancer Advocate

Ivy Elkins

Ivy and her husband Ben Elkins

When I was diagnosed with stage IV lung cancer in December 2013, I was completely shocked. As a healthy, nonsmoking, 47-year-old woman, I was totally unaware that someone like me could get lung cancer. Luckily, I received molecular testing, which revealed that I had an EGFR mutation, so I was started quickly on targeted therapy treatment. I took a daily, oral medication for almost 3 years with great success before my cancer figured out a way to sidestep this medication and developed a new mutation. In November 2016, I started treatment with another targeted oral medication and have already seen a significant positive response.

My cancer is not curable at the moment, but it is treatable, and I have been fortunate enough to be able to treat it as a chronic disease. I live in the Chicago area, have been married for over 21 years, and have two teenage boys. Due to the advances that have been made in targeted therapies for my specific type of lung cancer, I can live a normal, active life. Since I have benefited so greatly from medical research in lung cancer, I feel a personal obligation to give back to the lung cancer community.

When I was first diagnosed, I was immediately thrown into a new world where everyone seemed to speak a foreign language — the language of cancer. I was not comfortable without a full understanding of my disease, treatment plan, and prognosis, so I decided that I needed to become as educated as possible in order to advocate for myself.

In the process of becoming my own advocate, I found a community of lung cancer survivors and resources through the LUNGevity Foundation. I started interacting with fellow patients on LUNGevity message boards and in person and have been fortunate enough to attend the LUNGevity National Hope Summit in Washington, DC, for the past 3 years. These summits have provided me with fantastic educational opportunities and the chance to interact with oncologists, other medical professionals, fellow patients, and patient advocates.

As I became more involved in the lung cancer community, I soon recognized that many other patients were not necessarily as well-informed about lung cancer as I was, and I felt that it was very important to me to help them as much as I could. I became the moderator of a LUNGevity Facebook group dedicated to EGFR patients, and I scan the Internet daily for news related to lung cancer to post on this site, in addition to interacting constantly with the other patients on the site. I also became a LifeLine Mentor through LUNGevity for a woman with a diagnosis similar to mine and provide her with frequent support.

While attending a LUNGevity advocacy program, I learned about the Department of Defense (DoD) Lung Cancer Research Program. I saw an opportunity to help on a larger scale as an advocate and to bring attention to lung cancer's need for more research funding. Although I do not have a scientific background (I have an undergraduate degree in English from Princeton and an MBA in Finance from Wharton at the University of Pennsylvania), I have a very analytic mind and enjoy speaking and interacting with others.

In November 2016, I served on a DoD peer review panel to review lung cancer research proposals. My interest in the science of lung cancer helped me greatly in assessing the proposals I was assigned. As a consumer reviewer, I interacted with lung cancer scientists and clinicians and was able to provide the perspective of a lung cancer patient. I believe that there is a crucial need for the perspective of patients in the funding of new developments in the field. I was thrilled to be an active participant in decision-making and extremely pleased that the scientists on my panel appeared to value my opinions. I enjoyed my DoD work very much, and I think I truly contributed to the choices made by the panel. I hope to serve as a consumer reviewer on a DoD lung cancer panel again in 2017.

About Us The CDMRP originated in 1992 via a Congressional appropriation to foster novel approaches to biomedical research in response to the expressed needs of its stakeholders-the American public, the military, and Congress.

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